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February 12, 2013- "Youths with Autism Spectrum Disorder Need Help Transitioning to Adult Health Care, Says MU Expert"- Nancy Cheak-Zamora, an assistant professor in the Department of Health Services in the MU School of Health Professions, has recommended that the medical community develop health care transition (HCT) services to help children with autism. HCT services help young people with healthcare needs to transition from pediatric to adult health care. The assistant professor recommended this to the medical community after she discovered that less than a quarter of youths with ASD receive HCT services compared to about half of the youths with other special health care needs.

September 29, 2014- "Young People with Autism more Sedentary, Study Finds"- A recent study found that children with autism tend to be less physically active than their neurotypical peers. On average, kids with autism spend 50 fewer minutes each day participating in moderate physical activity. Although young people with autism were less active, the researchers found that they were similarly capable in nearly all of the fitness tests. This is important because it means those underlying fitness abilities exist and that more research into why children with autism are more sedentary could lead to ways to reverse the trend.

July 31, 2015- "Young Adults with Autism Show Improved Social Function Following UCLA Skills Program"- A study demonstrated the effectiveness of a social skills programs known as Program for the Education and Enrichment of Relational Skills, or PEERS, at UCLA. According to founder and director of the UCLA PEERS Clinic, this is an important study because there are very few social skills interventions currently in existence for young adults on the spectrum, and aside from PEERS, none has been shown through research to be effective. Participants within the PEERS group improved significantly in the areas of social skills, frequency of social engagement, and social skills knowledge, and autism symptoms related to social responsiveness diminished. While these results are promising, it should be pointed out that only 22 participants took part in the study.

August 11, 2015- "Young Adults with Autism Flounder in Face of Service Gaps"- According to this article, an estimated half million individuals with autism will transition to adulthood over the next decade, but there is a lack of supports and services for these individuals. This article discusses some of the types of programs that are in place that have been successful in different parts of the country.

November 13, 2015- "You Won't Guess Why U.S. Autism Prevalence is Now 1 in 45"- This article discusses how the prevalence rate of autism has supposedly increased from 1 in 68 to 1 in 45 based largely upon a simple change in how interviewers asked a question. Traditionally, in the National Health Interview Survey (NHIS) parents are asked to answer a series of three questions. They are first asks if their child had an intellectually disability. The second asks if their child had any developmental delay. And the third question lists several conditions from Down syndrome to sickle cell anemia to autism spectrum disorder, and parents are asked if their child has been diagnosed with any of them. However, in 2014, the survey was “tweaked” so that the intellectual disability question came first, then the question directly asking parents if their child had an ASD diagnosis, and the final question asking about any other developmental delay. According to this article, this simple change to emphasize the autism diagnosis question resulted in the near doubling of prevalence from 2011-2013 to 2014. Underscoring that this increase reflects a shift in how parents respond to the questions, the prevalence rate of “other developmental disorders” dropped in that same time period from 4.84% in 2011-2013 to 3.57% in 2014. This article goes on to discuss some other notable findings from the most recent NHIS survey.

A lot has transpired throughout the nation’s autism community in 2013. Over the course of the year, the autism community witnessed important events, published groundbreaking research studies, developed and released new autism-related technologies, and its members accomplish great feats, which inspired us all. Autism awareness has led to greater acceptance of people with autism and more education about the disorder throughout the nation. In 2013, the U.S. government pledged millions to autism-related research, autism awareness fundraisers across the nation set new records in participation and money pledged, and societal inclusion of individuals on the spectrum is becoming more of the norm as oppose to the exception. The National Autism Network launched our site in March of 2013, the Social Networking component of our community in November, and we have since witnessed our community grow to over 5,000+ members in less than six months. In our “Year in Review,” we invite you to look back at some of this year’s major events, research findings, tales of human interest, and technological innovations that took place in 2013.

Major Events - This past year was a significant one for the autism community. Between the new research claims linking everything from traffic pollution to grandfather’s age as a cause of autism to the release of new diagnostic criteria for the disorder, individuals in the autism community have had a lot to absorb and process. The National Autism Network has decided to highlight some of the major events in 2013 that will continue to have an impact on the autism community for years to come.

Important Research - Important research studies conducted in 2013 unveiled a number of revelations about the disorder. These discoveries demonstrate that individuals can indeed recover from autism, the environment can interact with an individual’s genes to cause autism, and there are potential clues for the disorder visible in infants as young as 2 to 6 months of age.

Human Interest News - A lot of individuals made an impact on the autism community in 2013. There are some individuals whose autism allows them to achieve the unbelievable and there are others who have overcome their diagnosis to achieve greatness. This section will highlight some of the 2013 accomplishments of the young and old on the autism spectrum.

Technological Innovations - This section of the National Autism Network’s Year in Review will focus on technological innovations that have assisted researchers and educators working with individuals on the spectrum. Technological innovations for the autism community can be incredibly hi-tech and expensive, such as robotics, or overly simplistic and ingenious, such as a cooking system designed specifically for people with autism.

With all that the community accomplished in 2013, we look forward to what 2014 has in store for us.

This was a big year for research in the autism community. The President signed the Autism CARES Act which authorizes more than $1.3 billion in funding for 2015-2019. There was also a historic partnership between Google and Autism Speaks that will give researchers around the globe access to the genomes of 10,000 families affected by autism. You can read about these major events in our year-in review finale here. This past year welcomed a number of studies that have given researchers more knowledge about the origins, impact, and treatment of autism than ever before. Below are synopses of the most impactful research studies of 2014.

Pollution's Strong Link to Autism- A nationwide study found a doubled autism risk among children of women exposed to high levels of particulate air pollution during pregnancy. The study found that the strongest exposure occurred during the third trimester, and the greater the exposure, the greater the risk. The new investigation spanned all 50 states by tapping into the national Nurses’ Health Study II, which has 11,600 participants. The analysis looked at pollution exposures before, during, and after the women’s pregnancies. The study found the most worrisome are particles small enough to be inhaled. The fine particulate matter is of special concern because it can penetrate deep into the lungs. This means the greatest exposures tend to occur near busy roadways. By contrast, researchers found no association when exposure occurred after birth or before the woman conceived. There was also found to be little association with exposures to larger particulate pollution (dust, mold, etc.)

Autism Care Can Top $2 Million per Person- A new study using data from both the United States and the United Kingdom estimates that the lifetime cost of raising a child with autism can be as high as $2.4 million. To arrive at that number, researchers estimated the cost of care, including special education, medical services, and housing for adults with the condition. The estimate also includes the loss of productivity of parents who must work fewer hours or quit their job altogether to care for their children with autism. The national cost of caring for children with autism was $61 billion to $66 billion in the United States and $4.5 billion to $5 billion in the United Kingdom. The national cost of caring for adults with autism was $175 billion to $196 billion in the United States and $43 billion to $46 billion in the United Kingdom. As the costs of care continue to rise, there is a greater call from the autism community to allocate funds away from research pertaining to causes and treatments and apply them more towards supports and services for individuals currently on the spectrum.

Increase in Autism Prevalence- The Centers of Disease Control and Prevention (CDC) released new autism prevalence figures based on the data collected by the Autism and Developmental Disabilities Monitoring (ADDM) Network. The data indicates that the prevalence rate of ASD has risen from 1 in 88 children to 1 in 68 children having an autism spectrum disorder in a span of just two years. The ADDM Network consists of 11 sites in the United States that report the rate of ASD for 8-year-old children within those sites. The 30 percent jump in autism prevalence was marked by “significant variations in ASD prevalence by geographic area, sex, race/ethnicity, and level of intellectual disability.” This indicates that there are disparities in awareness and access to diagnostic services across these demographics. This ADDM report provides a breakdown of prevalence by sex and race/ethnicity, overall ASD prevalence estimates by site, a breakdown of their analytic and evaluation methods, variation in ASD prevalence over time, future study directions, and more.

"CDC Whistleblower" - Many of you who follow autism-related news this past year will recall articles concerning the “CDC Whistleblower” who confessed to the link between the MMR vaccine and autism. In 2004, Dr. Brian Hooker and a team of researchers worked on a 2004 autism study that found no link between autism and vaccines, but earlier this year he claimed the researchers omitted data that would have indicated a link. Hooker conducted a re-analysis of data and published the findings this past August stating that his data showed that African American boys who received the MMR vaccine before 36 months were 3.4 times more likely to have autism than those who did not. As you might imagine, these findings went viral and were published by major news outlets all over the world. However, much like the Wakefield Study itself, Dr. Hooker’s study was retracted by the journal of publication less than a month after it was initially published. Sadly, this retraction has not been as widely publicized as the data irresponsibly gathered by Dr. Hooker. Read more about this underhanded practice in this year’s Media Sensationalism article.

Black and Hispanic Kids Underrepresented- A study analyzed administrative identification of autism in every state under IDEA for years 2000 and 2007 and found that black and Hispanic children were significantly underrepresented. The disparity in the odds of white students identified compared with minorities might reflect a similar phenomenon associated with the widespread increase in students diagnosed with learning disabilities in the late ‘70s and attention hyper deficit disorder in the ‘90s, the authors argue, and also shows that minority students are probably not getting the same services as their peers. The study also found that white students are more likely to access early intensive behavior intervention services, educational supports, and others designed for students with autism than their black and Hispanic peers. This is a continuing phenomenon in the autism community in which minority children are generally diagnosed later in life when compared with white counterparts. Read more about minorities on the spectrum in our article.

Biomarker Research Collaboration- Autism Speaks, the Simons Foundation Autism Research Initiative (SFARI), the National Institute of Mental Health, and the Foundation for the National Institute of Health have teamed up to speed up the development of autism medicines. The partnership, known as the “Consortium on Biomarkers and Outcome Measures of Social Impairment of Use in Clinical Trials in Autism Spectrum Disorder,” aims to identify and develop biological markers that researchers can use to measure the benefits of new and experimental medicines for treating autism. Biomarkers are critical to autism research because they may one day be used by researchers to identify autism subtypes and develop personalized treatments based on the underlying biology of each individual’s specific autism disorder.

Autism and GI Disorders- The first meta-analysis of all published research on autism and GI symptoms show that GI disorders are four times more common among children with autism than among other children. In the new analysis, the researchers reviewed all published research looking at GI symptoms and autism, more than 950 journal articles in all. The analysis found that in addition to children with autism being four times as likely as having GI issues, children on the spectrum were also three times as likely to suffer from chronic constipation and diarrhea.

No Vaccine/Autism Association- Another meta-analysis conducted in 2014 which involved ten studies including more than 1.2 million children reaffirms that vaccines don’t cause autism. If anything, immunization was associated with decreased risk that children would develop autism, a possibility that’s strongest with the MMR vaccine. The results are from the University of Sidney and one of the three authors of the study wrote an epilogue to the report discussing the importance of and the potential risk involved with vaccinations, although the researcher recommends the inoculations.

Important research studies conducted in 2013 unveiled a number of revelations about the disorder. These discoveries demonstrate that individuals can indeed recover from autism, the environment can interact with an individual’s genes to cause autism, and there are potential clues for the disorder visible in infants as young as 2 to 6 months of age. The list below will discuss some of the major research findings of the 2013 calendar year:

Autism May have many 'Lost Girls'- This study suggests that autism may be underdiagnosed in girls because they are not as hyperactive and typically display less problem behaviors than boys. There are no known biological differences between boys and girls with autism, and the lack of identification of these girls causes researchers to wonder if they are receiving the necessary supports in school. The difference in how girls display autistic traits may account for why boys outnumber girls on the spectrum at a rate greater than 4 to 1.

Whole-Genome Sequencing Unearths New Autism Mutations- The first sizable study to use whole-genome sequencing to investigate autism, known as the Autism Genome 10K, released its first results in 2013. The researchers collected complete genome data on 32 children with autism and their families. The researchers detected harmful de novo mutations in 15 of the children with autism. They determined that these mutations may contribute to autism symptoms in six of the children, or 19 percent, which is twice the proportion that other methods have turned up. In the process of discovering new genes linked to ASD, the investigators uncovered important medical information for several families. For example, two of the newly identified autism genes were associated with difficult to diagnose syndromes that also affect multiple organ systems.

Air Pollution and Genetics Combine to Increase Risk for Autism- According to newly published research, exposure to air pollution appears to increase the risk for autism among people who carry a genetic disposition for the neurodevelopmental disorder. The MET gene variant, which has been associated with autism in multiple studies, controls expression of MET protein in both the brain and the immune system and predicts altered brain structure and function. The study suggests that air pollution exposure and the genetic variant interact to augment the risk of ASD. Although gene-environment interactions are thought to be common in the development of the disorder, this study is the first demonstration of a specific interaction between a well-established genetic risk factor and an environmental risk factor that independently contribute to autism rick, according the study’s senior author Daniel B. Campbell, Ph.D.

Recovery is Possible- For Some- This study, led by Deborah Fein, Ph.D., found that children who had been accurately diagnosed with autism early in life lost their autism symptoms as they grew older. This report is the first to acknowledge that recovery from autism is possible, but researchers do not understand why and how some individuals recover and why some do not.

LEAP/TEACCH vs. Non-Specific Pre-School Model- This study found that preschoolers with ASD improve developmentally when high-quality early intervention is delivered – regardless of the treatment model used. This is the first study to compare long-standing comprehensive treatment models for young children with ASD. The study found that children maintain gains over the school year regardless of the classroom’s use of LEAP, TEACCH or no specific comprehensive model.

'Love Hormone' Shows Promise for Kids with Autism- New evidence suggests that a nasal spray of a naturally occurring hormone, call oxytocin, may help improve socialization among children with autism. The findings come from a study in which 17 children ages 8 to 16 with the developmental disorder who were randomly given a nasal spray containing the hormone or a placebo. The kids were then asked to complete a social task – identifying a person’s mental state by looking at picture of their eyes—and a non-social task—categorizing pictures of cars. Researchers used functional magnetic resonance imaging, or fMRI, to assess the children’s brain responses during the activities. This is the first study to assess the impact of oxytocin on the brain function in children with autism. The researchers found that brain centers associated with reward and motion recognition responded more during social tasks when children received oxytocin instead of the placebo. However, Dr. Paul Wang, senior vice president for medical research at Autism Speaks, believes that much more evidence must be gathered before oxytocin—or any drug—can be safely delivered to individuals with autism. Fortunately, longer studies are soon to commence that will test the efficacy of the drug on a larger sample size and test for lingering effects of the hormone after long-term use.

Are Babies’ Eyes the Window to Autism Diagnosis?- An interesting and potentially revolutionary study found that baby boys who will later be diagnosed with autism show a loss of interest in other people’s eyes between 2 and 6 months of age. This is the earliest behavioral marker of autism found to date. The researchers found that the steeper the decline in eye fixation over the first two years of life, the greater the level of social and communication impairment at 2 years old. Clinicians could potentially use this information to diagnose babies at this young age, allowing for them to receive proper interventions, thereby increasing the likelihood that they will gain functioning independence later in life.

Training Program Helps Students with Autism Land Jobs- This Virginia Commonwealth study had a control group of high school seniors with autism remain in their regular schools, receiving their typical individualized education programs, while a treatment group spent the year in an intensive, custom-designed study and job-training program at a suburban hospital. Upon graduation, 87% of the treatment group landed hospital jobs such as pharmacy assistance or teacher’s aide that paid above the minimum wage. Only 6% of the control group found jobs. A researcher in the study says a key to their success was discovering each student’s unique set of skills. This study demonstrates that when individuals on the autism spectrum are offered the right supports, they can excel in a career of their choosing.

Federal Aid for Autism Redundant- This is not a research study on autism, but the article highlights the wasteful spending by the federal government, who are using autism research dollars to conduct repetitive research. One of the key problems is that departments involved in research aren’t communicating well enough with each other. One example highlights five departments awarded roughly $15.2 million for 20 research projects that all had the same intervention, services, and support in diverse community settings goals. While this represents an egregious waste of federal tax dollars, it is also concerning for the autism community as the federal government is likely only focused on a few subject areas, causing many potential research subjects to be left unexplored.

October 15, 2014- "Yale Study: Siblings of Autistic Children have 20% Chance of Developing Disorder"- According to recent research from the Yale School of Medicine, younger siblings of children on the autism spectrum have a 20 percent chance of developing the disorder by age 3. The research found that 57 percent of those brothers and sisters will show symptoms by 18 months old. In about half the siblings, poor eye contact and lack of gestures predict the disorders. Others show repetitive behaviors or have limited non-verbal communication skills.

February 5, 2013- "Yale Study: Autism Might Show Up by Six Months"- A study at the Yale University School of Medicine indicates that symptoms of autism spectrum disorders may appear in infants as young as 6 months. The study found that children who would eventually go on to be diagnosed with autism were already paying less attention to people and their activities than typically developing babies. The study had the children watch a three-minute video depicting a woman engaging in activities like making a sandwich or looking at toys. The actress would attempt to engage the children and talk to them. Children who would later be diagnosed with ASD looked less at the scene and the video and, when they did pay attention, spent less time looking at the woman’s face.

September 17, 2014- "Yale Study Shows Risk Patterns for Autism and Schizophrenia Associated with Birth Size"- A new study from Yale found that bigger babies have increased risk of developing autism, while smaller babies are more likely to develop schizophrenia. An analysis of 1.75 million Danish babies led to these conclusions. A theory that the activation of select paternal genes favor larger and more demanding babies was found to be true through this analysis in regards to develop autism. Conversely, maternal genes that favor smaller and easier-to-handle babies, thereby protecting the mother’s ability to deliver more children, might confer greater risk of schizophrenia. The article concludes with a possible explanation for this biological mechanism.

December 7, 2015- "Yale Seeks more Objective Autism Diagnoses"- Currently, getting an autism diagnosis can take several months of doctor’s visits (or more) and relies upon the opinion of the doctor conducting the diagnostic tests. According to Alison Singer, president of the Autism Science Foundation, “Your likelihood of receiving an autism diagnosis, unfortunately, is very much dependent on where you live and which clinic you’re able to get to—if you’re able to get to a clinic at all.” To advance the diagnostic method towards implementing more objective criteria, the Yale Child Study Center is spearheading a $28 million effort known as the Autism Biomarkers Consortium for Clinical Trials. The scientists will measure the child’s brain waves with an EEG and track the child’s eye movement while given certain tasks to perform as these two approaches have the most support from previous research. The article goes on to discuss how it will carry out its plans to develop a more objective diagnostic measure for autism. Recently, National Autism Network published an article highlighting potential autism screening tools for the future.

September 14, 2012- "Yale Receives $15M Grant for Five-Year Study on Autism in Girls"- Researchers at the Yale School of Medicine have received a $15 million, 5-year grant to work towards developing diagnostic tools and treatment protocols in girls as part of a $100 million research project by the National Institutes for Health.

December 31, 2015- "World's Largest Autism Research Program Hits Major Milestone"- Recently, researchers of EU-AIMS, the world's largest multi-center study of potential autism medicines, announced they have forged an agreement with the European Medicines Agency on procedures for selecting participants and assessing the effectiveness of new treatments. EU-AIMS stands for European Autism Interventions - A Multicentre Study for Developing New Medications. The European Medicines Agency is the European equivalent of the U.S. Food and Drug Administration. This regulatory agency must approve any new medicine being brought to market in the European Union. The article goes on to discuss future autism-related studies to be undertaken by EU-AIMS.

September 20, 2013- "World of Drugs"- The most popular drugs prescribed for autism in some countries often have serious side effects or have not been vetted in robust clinical trials, according to a new survey. In Brazil, the most popular drug prescribed for autism, known as thioridazine, losers aggression and negative thoughts, but can also cause an irregular heartbeat. The article goes on to discuss the drugs prescribed to children across the globe and their side effects, including risperidone, which is available in the U.S.

April 9, 2013- "Workshop Report: Online Phenotyping"- This past Valentine’s Day, the Simons Foundation Autism Research Initiative (SFARI) hosted a workshop to explore the benefits and drawbacks of using online tools to help collect data from individuals with autism as an alternative to bringing families into clinical centers. On the one hand, online assessments don’t include travel costs and researchers can automatically access the data, however online questionnaires may be less reliable than traditional clinical assessments.

February 12, 2013- "Workshop Report: Glia's Role in Autism"- This article discusses the results of an organized meeting of top scientists from the Simons Foundation Autism Research Initiative (SFARI) and the Rett Syndrome Research Trust. The purpose of the meeting was to discuss the recent research that indicates that glia, the non-nueronal cells that reside in the brain, plays a critical role in many brain disorders, including autism.

June 30, 2013- "Working to Combat the Stigma of Autism"- In Korean culture, the stigma of autism still runs high. So much so that this article details several accounts of mother’s refusing to believe their child has the disorder or going into “hiding” once their child receives a diagnosis. To help decrease the stigma and encourage Korean families to seek out a diagnosis, Autism Speaks has started an outreach effort. The effort began with a round of interviews in the community and an adaptation of autism literature for Korean readers. In late April, the local Korean news media were briefed on the project and the translated materials were spread to 60 pediatricians, preschools, and early childhood centers. In a year, researchers will measure whether the several early childhood agencies that contract with the city are seeing spikes in requests for help from Korean families with autism.

September 6, 2016- "Words say little about cognitive abilities in autism"- Study published in the Journal of Child Psychology and Psychiatry reveals that children with autism who speak few or have no words have cognitive abilities that far exceed their verbal skills.

October 24, 2014- "Word Grasp at 12 Months May Reflect Autism Symptoms"- Children later diagnosed with autism understand different types of words at 12 months than their typically developing peers. Researchers studied 213 younger siblings of children with autism and found they have up to a 20-fold increased risk for developing autism themselves. Specifically, compared with controls, children who are later diagnosed with autism are less likely to understand words with social meanings, such as “hello” and “you.” Conversely, they are more likely than controls to understand for objects, such a “bubbles,” “TV,” “blanket,” and “bottle.”

March 26, 2015- "Women with Severe Autism Point to New Gene Candidates"- Observing families with a history of severe autism among women has led researchers to unearth 18 new candidate genes for the disorder. One of these genes, CTNND2, plays a critical role in brain development. There is mounting evidence that it takes a “bigger genetic hit” to cause autism in girls than in boys. The article goes on to discuss how the study was conducted and what it could mean for future female diagnoses.

February 22, 2013- "Wired Differently"- A new brain imaging study maps out the regions in which the neural connections in the brain seem to vary the most among people. This particular study used typical adults, but lead investigator Hesheng Liu is beginning to use the same approach to study connectivity differences in autism. Liu says he is particularly interested in looking at individual differences in the hemispheric specialization, meaning one hemisphere is specialized for certain tasks, such a language, in the autism population.

November 12, 2013- "Williams Syndrome Reverses Patterns of Neuronal Branching"- According to a recent study, the branching patterns of excitatory neurons in people with Williams syndrome are roughly the opposite of the patterns seen normally. Neurons in Williams brains show more complex branching in areas of the cortex thought to be involved in processing emotions than in those involved in executive functions, such as working memory and problem solving.

November 20, 2012- "Will the DSM-5 Reduce Rates of Autism?"- This article refutes the claims of research by Dr. Catherine Lord relating to the new DSM-5 criteria affecting the rate of diagnosis for individuals on the autism spectrum. The article cites several small studies that claim that as many as 60% of children currently meeting the diagnostic criteria would not under the DSM-5 and stresses the importance of how changing diagnostic criteria could result in a number of children missing out on critical support services.

May 8, 2015- "Will Communication Device Hamper Real Speech in Child with Autism?"- This Q&A is from a parent who is worried that by giving their child a speech-generating device the therapists are giving up on their child’s ability to speak. Fortunately, research has demonstrated that the introduction of speech-generating devices can actually lead to the development of verbal speaking. By providing children with a “voice” it can both encourage them to communicate with others and provide them with a model of the sounds necessary to imitate and develop spoken language.

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